Stories of brain cancer, starting with our own

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When David was diagnosed at 16, he was the first person in my immediate family to have a cancer diagnosis. We were shell shocked, to say the least. To be told that your seemingly healthy teen who had a bad headache is going to die… well, nothing prepares you for that. What happens next, though, is something I very much hope we can help parents prepare for.

David went to heaven four years ago, but we have stayed very active in the brain tumor community. It has been a huge part of my life for the last six years. (He was diagnosed in 2010.) I’ve learned a lot since then, some of it while David was in treatment, and some of it after he passed. All of it is information that I would rather forget, but it is important for parents like me to share their journeys so that those who follow after us can have a smoother path.

So here it goes, my top 9 tips for parents who’ve just heard that their child has cancer:

1. GET A SECOND OPINION. (Sorry for the all caps there, but really, this is important.) I don’t care that your doctor has been your family’s doctor for the last 3 decades. I don’t care if you are at one of the top hospitals in the country. Get a second opinion. Doctors are humans, and a lot of what happens in cancer treatments is up to their judgement. You may find that you don’t want to be on the path that they recommend. That isn’t a criticism of them. People are different. Paths are different. You almost always have to talk to more than one institution to know what all of your options are.

2. Do your research. Over and over again, I talk to families who say, “Well, our doctor said it is a ___ and we should do ___.” Then they just do it. We’ve been trained to honor medical professionals and trust their judgement. That’s not a bad thing. But being led around like a blind sheep can lead you into a treatment path that isn’t right for you or your child. When you are given the diagnosis, look it up. Start with major websites that can give you reliable information. A really good place to start is at https://www.cancer.gov/types

From there, look for foundations that specialize in the type of cancer that your child has. Since David had brain cancer, I can tell you that the sites I found useful were:

https://endbraincancer.org/we-can-help/ – to get guidance on what your next step should be. At the time I sought their advice, they were very frank about the type of testing they recommended and what to look for in a doctor, including referring me to a Neuro Oncologist.

3. If at all possible, go to a hospital that has a brain tumor team. ABC2.org only lists hospitals with a dedicated brain tumor team. The world of brain cancer research was virtually stagnant for many years, but in the recent couple of years, discoveries are being made very rapidly.I don’t think it is practical to expect a doctor that deals with many types of cancerto stay on top of every new treatment coming down the pike. Most will wait for the “tried and true” treatments before they change their recommendations. Brain cancer patients frequently don’t have that kind of time. Cutting edge treatments could mean the difference between life (or at least extended life) and death.

4. Ask every question you have. Write them down between appointments and don’t be shy about going through your list. The medical staff is there to help you and your child and the first step of that is making sure you understand what is going on.

5. Don’t be afraid to “fire” your doctor. I know that isn’t going to make me very popular with some folks, but here’s the deal. This is the single most stressful thing you will ever go through. You need to know that the doctor is 100% on your side and will fight for your child. If they ever make you feel like you are wasting their time, or your child doesn’t deserve treatment, move on.

6. Seek help. If you have found a doctor you like, but they are far away, ask for help. There are many foundations that fund travel and related expenses. Hospitals themselves sometimes have funds or auxiliary groups who can assist you. Crowdfunding websites help people raise money all the time for just this reason. You aren’t a slacker if you need help paying for all of this. Treatment is expensive. Time away from work means you have less money than normal. Going to doctor’s appointments means you need extra daycare, pet care, home care. It adds up. You can find a list of resources for brain cancer patients at http://www.dragonmasterfoundation.org. (Full disclosure: I’m President of that foundation.)

7. Make a Plan B. For everything. You may have a reliable vehicle, but what happens if your transmission blows? You have a friend picking up your other kids from school, but what happens when they get the flu? Most likely, you have people offering to help you, but they don’t really know what to help with. Get them involved in your plan B.

8. Make a treatment Plan B. I could have included this above, but this is super important. If your child has an aggressive cancer or one that has a high probability of recurrence, ask your doctor to tell you what the next line of treatment is. Time after time, people are lulled into a sense of security because treatment is going well, and the BAM! The cancer comes back. Everyone wants to believe the treatment will work, and if it fails, you have that same shock that came with diagnosis. Knowing what the next possible treatment is can really help you feel more prepared.

Side note: We were blindsided when David’s cancer spread. He had been on a clinical trial and was doing so well that his results were presented at a conference. We just knew he was going to beat his cancer. When it spread, we were kicked off the clinical trial and had to scramble to figure out what options were available for him.

9. Trust yourself. All of the tips above are for families who are prepared for an aggressive battle. However, not every family chooses that path. We were fortunate because David was a teenager and could tell us his wishes for treatment. Most parents are dealing with younger kids who may or may not understand the repercussions of treatment. We had an amazing neuro oncologist who would always lay out possible treatment options to us and the last choice was always, “or you can do nothing.” David had glioblastoma multiforme, and even now, six years later, there are no easy answers for that type of cancer. Brain cancer is a tricky, nasty beast. If there were one thing that was certain to work, I would recommend it, even if it made the child feel bad for a while. After all, what is six months of feeling bad compared to the potential 77 years of life lost when a child dies from cancer? But with brain cancer, there are no guarantees. Heck, for the aggressive cancers, there is very little hope. The families that push forward with treatment do so because it feels right for them, and frequently, because they want to help other people.

David was pretty adamant about helping others. His tissue was donated to research, and it is now part of an open access database that is empowering research around the globe. (This is also a project funded in part by Dragon Master Foundation. For more info on that, go to Cavatica.org.) It was a heart-breaking journey, but it was not in vain. I know that David would be thrilled to know that researchers are sharing data and working around the clock. We don’t know the answers yet, but I have every confidence that they are on the horizon.

I used to preface my help to people by saying “I’m JUST a mom…” because in the world of cancer research, I don’t want to come across as a doctor or researcher. However, my hard earned “momcology” degree is valuable, and I’m moving forward with a sense of purpose that my message is important and needs to be heard. Do you have tips you’d like to share for newly diagnosed patients? Please share them in the comments!

My husband, Ryan, was diagnosed with a Grade IV Glioblastoma Multiforme brain tumor in 2005 at the age of 29. My once very healthy and strong husband started having headaches that he couldn’t kick, then headaches with vomiting. Then one day, after working third shift as a Deputy Sheriff, he woke up on the floor of the bathroom and did not know why. We had been married for 5 years and had two daughters…our life was never the same. In an effort to convey even a small ounce of what this journey entailed for him, our girls and for myself, I am writing my letter to him…for everyone reading this.

To My Best Friend in Heaven, I wish I had known that you were going to be angry after your brain surgery. No one prepared me for how you would feel. The fear of the unknown and uncertainty of your future came out in angry words, and you had every right to be mad as hell. If someone had told me what to expect, I would never have taken it personally. I would have been better prepared to accept your anger and help you cope with it. Now, I carry my own anger.

I wish I had known that stacks of medical books and physician’s articles would never give me the knowledge and skills I needed the most for you. Medical terms, chemo side effects, and hoards of medication pamphlets never taught me how to care for you emotionally and mentally. It took time, patience, tears, hope, pain, practice and knowing you as well as I did, to try and ease the burden you carried within you that the cancer had not touched. All the hours of reading and research, provided no fool-proof answers, like simple love did. Now, I know I gave you the best love I knew how to give.

I wish I had known how to help you get your life back once your brain cancer was stable. For years you took combinations of chemotherapy and other drugs, in a constant fight and full of hope for beating your disease. Once the active fighting was done, you tried to move forward and struggled with a new normal. I didn’t see that then like I do now. No longer a police officer, you made so many attempts to build a new career for yourself. I did not realize then, how all those toxic “live saving” chemicals changed your thinking and the way you saw things. You were no longer fighting the cancer, but fighting to live like you had before it ravaged your veins. Now, I know what it is like to lose the life you had.

I wish I had known how quickly and swiftly our lives would change. It was only September, that we were told the cancer was growing again. Late May, we proudly watched our daughter graduate. Father’s Day, I fed you your favorite meal and warmed inside to see your crooked grin. Then the medicine stopped working and we had run out of options. In a matter of weeks, you went from fully functional and independent to bedridden and reliant upon others for your total care. You tried so hard to do what you could. Now, I know what it is like to live with unwanted change.

I wish I had known how raw and painful it is to watch the father of your children, your best friend, your companion, and your other half to lose his life. Humans were not meant to endure the death of their closest loved ones; I am convinced of this now. Out of all the doctors, counselors and nurses we entrusted your life to in almost 8 years, not a one of them told me of the intense misery that I would endure while watching you take your last breaths. I still see the entire process in my mind. I carry the helplessness of the Hospice staff in my chest. I hear every struggled sound. I feel your motionless hand in mine…slipping away for eternity. Your last moments here with me replay in my soul, unwelcome, erratic and without notice of arrival. Now, I know the pain of a shattered and irreparable heart.

I wish I had known how alone life would feel once you were gone. You were part of me and I was part of you. Each morning and evening, you were here with me. And now a part of life is gone. I have no way of figuring out how to be me, without you. Now I know what lonely really is. With all this I wish I had known before you were diagnosed with brain cancer, I realize that if I had known the road we would travel…I would choose to travel it all over again just to be with you once more.